Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!

558 replies

anorak · 14/03/2008 21:25

There seem to be quite a few of us now so I thought we might like a place where we can congregate to laugh, cry, share, compare notes and give each other a bit of support.

OP posts:
JRocks · 08/07/2008 16:29

Hello everyone, just dropping in.. wanted to say that I'll be thinking of you all on Sunday as I'm running the Race for Life. Mum has her final chemo the following day so it feels like things are finally on the up here. Love to you all

Original poster
anorak · 09/07/2008 18:15

Hi all, just wanted to let you know that I am going to England for a few weeks, I leave tomorrow and although I will be able to look in, I don't know when and how often as I will be staying with various relatives and friends. Hope you all get on okay x

OP posts:
TheMadHouse · 09/07/2008 18:16

Anorak - hope you have a good journey and are prepared for the wet weather. Happy Birthday by the way. If you are anywhere in North Yorkshire let me know

huffpuff · 09/07/2008 22:17

Anorak - hope you have a nice time - unfortunately, its very very wet atm so bring an umbrella!!

Will miss your words of wisdom so hurry back!!! XXX

lalaa · 10/07/2008 13:41

Hello all
How are you all getting on? I haven't posted for a while but do look in everytime I'm on MN.

I had my blood test for the genetics testing yesterday. Took me right back to the 3 weekly jobbies I used to have to do before chemo. Lots of not being able to find a vein and stabbing me multiple times.....And now we wait for 3/4 months for a result....

My annual check is coming up on 30 July and it's starting to play up in my mind now. Last year, I was in a dreadful state by the time came. I think I am calmer this time and I am so grateful for being well now. I suppose I just want it to continue and naturally, I'm concerned about what might be found.

Ah well. Can but wait....

TheMadHouse · 10/07/2008 19:03

Evening all

Well I saw my plastic surgeon today and discussed my options regarding my double mastectomy and reconstruction and he agreed that if I can get to 80kg we are on for the tummy one - only 14kg to go

La - did you see this

BlaDeBla · 11/07/2008 17:25

My annual check is the week after yours, lalaa. Dh is down for genetics testing. I keep on reading about over-60s being screened for bowel cancer, so hopefully he will start that anyway. 14kg - well done, TMH! i've put on about 8kgs over the past few years since the children arrived, and although it fell off when I was in hospital, it found its way back v. quickly when I got out! I don't know if I will ever be my skinny old self again, and I can't think it really matters. I am so cross with the silly nurse who weighed me - I told her NOT to tell me how heavy I am, because I just don't want to know, so she told me. It is an irrational remnant of an old eating disorder and I just don't want to know my weight.

My arm is getting a bit better. I bashed it quite hard and got a big bruise. So far it doesn't look as though it has puffed up.

lalaa · 12/07/2008 13:34

TMH - at that article. My dad has been quite negative about me having the test. I do find it very difficult to understand how people can choose not to have it, when it doesn't just affect them. I couldn't live with myself if I chose not to have it and then my dd, or my cousins, or my sister then went on to contract breast or ovarian cancer, and it could have been spotted if I'd had the test.

And it infuriates me hugely when the medical community say, well, breast cancer is a very treatable disease these days. Yes, but it's very unpleasant treatment and once cancer is lurking around, you have to live with uncertainty for the rest of your life. Agggghhhhhh. Sorry, that isn't very positive, but I think we all know that that is the reality for all of us.

TheMadHouse · 12/07/2008 19:29

You ladies have all been through so much, I am gratefull for being given the chance to have these operations and escape the horror that is chemo.

I can not believe that attitude in the slightest. The gene also effects boys and men

lalaa · 13/07/2008 12:22

My Dad is in the dark ages as far as emotional health is concerned and he'd far rather lock anything slightly worrying away in a black box in his mind and not think about it. So, my gues is he thinks that should be the same for everyone.

The fact is that if I have the faulty gene, it will have come through his line, and I wonder whether that has anything to do with it, even at a sub-conscious level.

TMH, I think you are brilliant in the way that you are facing up to your operations. I've had a quick scroll up - is it 21st July you're going in? And have you got lots of people around to help afterwards while you recuperate? Can we help?!

lalaa · 13/07/2008 12:24

Sorry, am obviously blind - just read that you are losing weight beforehand.

pigleto · 13/07/2008 13:12

I had my gene testing in america. They have a different attitude to the whole thing over there, more that you have to opt out than opt in IFKWIM. I wasn't given time to think about it (not that I needed any time) I needed to know if my dd was threatened, also I think if I had tested positive I would have wanted my ovaries out and the other boob off sharpish. I am always of the opinion that you should know everything that you can. If I had known that I was going to get cancer I would obviously have had all the dangerous bits chopped off years ago.

I don't understand why the testing is so difficult to get in this country. I think they should test everyone routinely as a matter of course.

lalaa · 13/07/2008 19:45

As is the case with so many things in this country, it's a case of if you don't ask, you don't get. I know someone whose mum, twin sister and sister also was diagnosed with breast cancer, and they havne't been offered genetic counselling. Bloody madness.

TheMadHouse · 14/07/2008 09:40

Pigleto - There are numerous reasons at the moment for the testing not to be compulery.

1 - you need to have a relative who has the cancer or have cancer yourself for the initial test to be done - due to the number of genes that would be tested.

2 - Cost - of cource. It is pricey and there are only a number of labs in the UK capable of testing. My Aunts was eventually tested in the US

3 - Insurance. At the present time there is an issue with insurance companys which is to be reviewed in 2011. They can not ask if you have had the test, but also they will not change the premium, if your history shows lots of cancer, but your test is clear.

4 - Treatment - once a positive test has been given then addditional screening has to be offered, which again is an increased cost for the PCT.

I think that my feelings on the testing have been made know due to my actions, but then I am not an ostridge.

Lalala - I will also lose an additional 3 - 4kg when they do the mastectomy and reconstruction. I will be half the size

huffpuff · 14/07/2008 20:03

hi all - had 3rd cycle of chemo and am now officially half way through my treatment!

Plus, they got a vein first time which was good and saved time.

Now prepared to feel like pants for the rest of the week but it is SO SO good to know that i only have 3 more cycles left.

I have to have a scan and mammogram next Tuesday to see how much the tumor has shrunk. Then 15th Sept is my last chemo!!!!!!!!

Hope you are all ok XX

JRocks · 14/07/2008 20:26

Hello all - Mum finished her chemo today, and her hair is starting to come back in a fine fuzz all over her head Hope everyone is ok, good to see the thread still going strong x

pigleto · 15/07/2008 11:00

Glad you are feeling so positive Huffpuff, good luck with your scan. I hope it has shrunk loads.

If they did gene testing on everyone in the UK for known health risk factors it would result in people not being able to get health or life insurance. It is morally wrong that people should be afraid of being tested as they are going to punished financially if the test brings back bad news. It makes me .

Dd has been trying on her flower girl dress today, (she and my niece are going to be flower girls at my cousins wedding) she is so excited about the whole thing. She wants to get some lelly kelly shoes to finish the whole outfit off. She is such a diva.

lalaa · 15/07/2008 14:27

pigleto - lol at your description of your little girl being a diva: I have one of those too.

huff: congratulations - half way there. That's fantastic!

triplets · 15/07/2008 22:35

I am sort of an outsider here, but just want to say I have been reading your posts and admire your courage, all of you. My DH is in bed atm very sick with his chemo, life is pretty tough atm, I don`t know how you all do it, brave brave ladies xx

lalaa · 16/07/2008 17:04

triplets, caring for your dh is, imo, as difficult as being the one who is ill. if you are the ill one, you have to get your head around it and get on with it the best you can. being the carer is hard (harder?) emotionally, particularly with children to care for. my dh was hugely stressed for a very long time after i was ill. it was only afterwards we realised the extent of it.

come along here any time for a chat or a rant/moan!

triplets · 16/07/2008 22:38

Thank you lalaa, it is very hard, esp as I think it is really sinking in for the children, they have hardly seen him the last three days, they are only 10, it just breaks my heart, for him, for them.

triplets · 16/07/2008 22:42

lalaa, you are not on the cancerbackup forum are you?

lalaa · 17/07/2008 12:33

nope. I used to go on the breastcancercare forums but they depressed me so I stopped going!

TheMadHouse · 18/07/2008 19:08

Welcome Triplets

These ladies are lovley and welcomed me with open arms, even though I dont have cancer - yet and hopefully never.

Huffpuff - glad you are feeling more positive and hope the scan is/goes OK

I undergo stage one of my surgery on Monday, hopefully just ovaries and tubes, but I have to sign to OK a hytorectomy just in case. I will be in hospital overnight if all is OK.

we have a day out planned in the rain for tomorrow for us all - RHS Harlow Carr childrens music festival and then meeting friends on Sunday to keep my mind of things.

I also plan to get the house/ironing etc sorted so that DH can keep up, he is off Monday and Tuesday and working from home the rest of the week

lalaa · 18/07/2008 19:49

TMH all the very best for your surgery. Take it really easy afterwards!

Swipe left for the next trending thread